Introduction

Pancreatic cancer is the 4th deadliest cancer in Europe, with more than 95% of those affected dying from the disease, and is set to be the second greatest cause of death from cancer by 2020. This is mainly due to the lack of awareness and prioritisation of this disease that has a median survival time of three months for a diagnosed person. Due to the high mortality of the disease and thus the lack of survivors, there are only six pancreatic cancer patient organisations in Europe. Although these organisations provide useful information tools to patients, they only cover a limited amount of countries. That is why, ECPC, as an umbrella organisation, also wants to bring its contribution in raising awareness about this deadly type of cancer also known as "the forgotten cancer".

The  colour for pancreatic cancer is purple and the chosen symbol is a kite as it is a simple symbol of hope. A flying kite has the power to rise above an overwhelming obstacle and can be seen by everyone. 

World Pancreatic Cancer Day

A ''Day of action, a world of difference''.

The idea behind World Pancreatic Cancer Day (WPCD) is uniting the planet to support a common goal. Knowledge is one of our best tools in the fight against pancreatic cancer. By providing education about the disease and increasing awareness of its devastating impact, we hope to change the outlook for patients and families. 

In November of each year one day is dedicated to pancreatic cancer. People can come together to draw attention to pancreatic cancer and highlight the need for greater awareness, funding, and research. By standing in unison against this deadly disease, we hope to save lives and create a brighter future for people around the globe.

Find out how to get involved here.

In 2016, WPCD will be on the Thursday, 17th of November

ECPC is a member of the WPCD Committee for the year 2016-2017, The main goal of the 2016 Campagn is to raise global awareness of pancreatic cancer and mobilise the world to join the fight against pancreatic cancer. The theme for 2016 is: ‘United, we are stronger in our fight against this disease and we are In It Together’. 

ECPC's involvment in patforms dealing with Pancreatic Cancer

Pancreatic Cancer Europe

Pancreatic Cancer Europe (PCE) is a platform that started in 2014 from a desire to build a platform of experts, patients, policy makers and industries to discuss means of tackling pancreatic cancer;

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PCE is composed of 40 national and EU experts (academics, patients, clinicians, researchers, industrials), and championed by 4 Members of the European Parliament (Philippe De Backer, ALDE, Belgium, Françoise Grossetête, EPP, France, Philippe Juvin, EPP, France and Daciana Octavia Sârbu, S&D, Romania) and is committed to raising awareness around pancreatic cancer in view of improving standard of care, diagnosis and data collection for patients suffering from this deadly cancer across Europe. The major consensus of the Platform is to ensure that pancreatic cancer is no longer a “forgotten cancer” through the creation and distribution of informative material tailored to educate the public, medical professionals and policy makers.

Since its foundation, PCE has made significant advances: “10 key facts” and “10 warning signs of PC” are documents that inform the public about the basics of pancreatic cancer and the low lying symptoms to watch out for. “Think PC” is directed at healthcare professionals and in particular, GPs to watch out for combinations of symptoms that could indicate pancreatic cancer. The “PC Declaration” signed by Members of the European Parliament acts as a commitment to put pancreatic cancer on the political agenda, to create policies specific to the challenges posed by pancreatic cancer and to take concrete steps on the road to better care for patients.

The work has now begun on disseminating the materials throughout the Member States and reaching people at national level through national allies/organisations and through the PCE website which acts a portal for those seeking more information on pancreatic cancer. Most of the materials have been translated in order to facilitate this process and maximise the impact. 

Within the PCE, ECPC is chairing the work stream that coordinates and supports national activities as well as the uptake of the materials produced by Pancreatic Cancer Europe. With coordinated actions at national level designed to raise awareness and increase early diagnosis we want to ensure that pancreatic cancer is "forgotten no more".

ECPC was selected to chair this stream of work due to its impressive work during the first World Pancreatic Cancer Day held in 2014. Indeed, in November 2014, ECPC held a stand for 3 days at the European Parliament distributing materials on pancreatic cancer.

Involvement of ECPC member organisations

In 2014, Romanian member organisation "Sfanta Ana", chaired by Bogdana Costoiu, joined our awareness efforts and lit up in purple, the colour of pancreatic cancer, the GATE OF KISS in Targu-Jiu.

In 2015, ECPC member FAVO, lit up in purple the Sforzesco Castle, symbol of Milan. K.E.F.I. members from Greece were also deeply involved, organising in 2015 an event as well as a press conference on pancreatic cancer.

More information about Pancreatic Cancer Europe can be found at: www.pancreaticcancereurope.eu

The platform is financially supported by Celgene and Baxalta(now Shire).

 

World Pancreatic Cancer Coalition (WPCC)

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After several successful meetings of pancreatic cancer organisations in Europe over the last 2 years (hosted by Celgene) and successful World Pancreatic Cancer Day (WPCD) events in 2014 and 2015, there was an interest from pancreatic cancer organisations across the world to partner, collaborate and take WPCD to the next step. As these positive working relationships have developed, there is an even greater opportunity for collaboration on a global scale to accelerate all the efforts. This collaboration would best be driven forward by an independent coalition of partners.

A coalition would be well-positioned to develop plans and initiatives to support individual partner organisations as well as positively impact the overall pancreatic cancer movement. Working together, a coalition can drive transformational change for all those impacted by pancreatic cancer.

This is why the World Pancreatic Cancer Coalition (WPCC) was set up. In May 2016, the first formal partner meeting and the formal launch of the WPCC took place in Orlando, Florida. ECPC was present at the meeting.

The coalition is chaired by Julie Fleshman, Pancreatic Cancer Action Network (USA). The other founders include Ali Stunt - Pancreatic Cancer Action (UK), Alex Ford - Pancreatic Cancer UK (UK) and Barbara Kenner - Kenner Family Research Fund (US).

Initially, the coalition will have WPCD as its main activity, but in the future, it is envisioned that other priorities and initiatives will be taken on. The planning for the 2017 meeting will start immediately with a view to linking the meeting with a publication of a Coalition ‘report’ – for example, setting out key ‘global’ pancreatic cancer issues and priorities that can guide the focus of the Coalition’s ongoing work plan.

ECPC is a member of the WPCC and will represent the voice of its 400 members within the Coalition. 

More information about the WPCC and about becoming a member can be found here: http://www.worldpancreaticcancercoalition.org/about-us/

The WPCC is sponsored by Celgene, Lilly Oncolocy, Baxalta and Halozyme.

 

WPCC sponsors

 

Background note

  • Pancreatic cancer has the lowest survival rate of all cancers, just 2-10% of those diagnosed survive for five years1;
  • Survival has improved for most cancers over the last 40 years but not for pancreatic cancer2;
  • Early diagnosis is key: patients who are diagnosed in time for surgery have a much higher likehood of surviving 5 years3;
  • Pancreatic cancer has been underfunded for decades and receives less than 2% of overall cancer research funding4;
  • Pancreatic cancer is the 7th most common cause of cancer-related death across the world5;
  • Pancreatic cancer is nearly always diagnosed too late making the overall median survival for a person diagnosed with metastatic pancreatic cancer 4.6 months6;
  • Studies show that death rates for pancreatic cancer are increasing while for most other cancers they are decreasing7.

 

1. World Pancreatic Cancer Day http://www.worldpancreaticcancerday.org/about/ 
3. World Pancreatic Cancer Day http://www.worldpancreaticcancerday.org/about/
4. NCRI (UK) http://www.ncri.org.uk/what-we-do/research-database accessed 06/10/2014 
5. World Cancer Research Fund International/ http://globocan.iarc.fr accessed 06/10/2014

 

 

Click here to download the "Parliament Magazine" special supplement on Tackling Pancreatic Cancer.

Click here to download the complete list of initiatives to raise awareness on pancreatic cancer across Europe.